This is a topic that is near to my heart. I was a 23 year old woman going on my own to doctors visits with excruciating shoulder pain that I attributed to dance classes I was taking. The responses I got fell in the range of: “but you don’t look sick” to asking me out on a date, to accusing me of not following through on PT when I was saying it was too painful to do. Well, lo and behold when after SIX months of miserable pain I finally got an MRI and was sent straight to the hospital because I had an “unheard of” bone-on-bone degenerated shoulder joint.
Let me say that this was right here in New York City at the “best” hospitals with the “best” doctors in the world. This can happen anywhere. It is absolutely imperative that you serve as your own advocate. No one truly knows what you are going through besides you.
How many times have I heard doctors tell patients that there is nothing they can do about their IBS - when they haven't even asked the patient about their diet. Or doctors who know about the low-FODMAP diet but then discourage their patients from trying because it is "too hard". Meanwhile, the patients I work with are willing to try anything - and most of the time are actually surprised by how much they CAN eat symptom-free.
I listened to this terrific SIBO Symposium streamed from Cedars Sinai and listened to this wonderful talk from Ashley Walkley an IBS patient advocate. It truly brought tears to my eyes to hear her narrative, and these are the stories I hear from patients every day. She well articulated the travails of life with IBS. It can be difficult and frustrating, but don’t let that make you give up hope.
The good news is that gut health is hot right now. There is a lot of research going on – not enough – but it is happening. We will learn more and get more answers. But we do know things that work. It’s not always a slam dunk on the first try, but we will get it. Hang in there!